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In this recent blog post, I discussed how my recovery after stem cell transplant has been much faster than average, and there are probably many reasons why that might be. No doubt the fact that my donor’s genetic markers matched my own perfectly—well, the genetic markers that hospitals check were a perfect match, anyway. There are literally hundreds of minor proteins that immune systems use to determine if cells are self or not. But maybe many of those were matched more than average, just by chance. I know I’m not out of the woods just yet, but there are some other possible reasons for my rapid recovery so far.

Greg and I are fortunate that he rarely needs to go to an office. Greg is a computer programmer, web designer and database manager; he has to work in an office about five days a year, and he goes to work-related retreats and conferences a couple of weeks a year. Otherwise, he’s at home. As a result, his exposure to infectious agents that in me might cause life-threatening illness is extremely limited. Most people don’t enjoy this situation, and so I’m sure the average person undergoing stem cell transplantation is exposed to many more infections than I have been.

But Greg and I have been extremely diligent as well. We’ve taken extreme measures to guard against infection. We’ve not allowed anyone in our house. All food, gifts, and mail is wiped down completely with bacteria- and virus-killing chemicals. (Yes, these are nasty . . . and that’s the point: Kill or be killed.) We got a high-end HEPA filter used in hospitals and endorsed by the American Lung Association. And these measures are all in addition to the regular extreme rules about cleaning, washing clothes, washing dishes, and such. And of course, I was a virtual hermit the entire time (with a couple of approved exceptions, when we walked in the park with friends).

Maybe all of this was overkill, or neurotic, or unnecessary. I know our lead nurse thought so; she promoted much more lax precautions. We didn’t buy what she was selling, however. Neither did my physician.‡ And even if my physician had agreed that these extra steps were a waste of time, I would’ve ignored him. If ever there was a time for overkill, I’d say this has been that time. When it’s time for my nurse’s stem cell transplant, she can be just as lax as she wants.

I have also been exacting in my drug schedule, and Greg has helped a lot with that. And we’ve learned about the drugs I’m taking so we can play a role in my care. That has been very important; on three separate occasions, my physician has prescribed a drug, and the wrong dose. This has happened every single time I have undergone cancer therapy (and I’ve had a lot of cancer therapy). They screw up the dose, and we’re the ones who suffer. I learned this lesson during my days of AIDS activism: Watch the physician’s every move and challenge when necessary; physicians are the top of the hospital’s class hierarchy, and no one else can challenge their actions (a stupid, archaic system that harms only one person: the patient).

Maybe our extreme safety measures had nothing to do with my unusually rapid recovery after the transplant. Maybe my insistence that the nurses gown, and wash their hands in addition to using ethanol gel, and use sterile technique in all their dealings (especially when accessing my chest port) played no role in my acquiring no nosocomial infections, but I’ll bet it did. The items on this list of things I insisted of my nurses are all things they normally never do, and I had to fight to get them to do them (as I always do). I rarely see nurses wash their hands, and when I’ve asked them to do so, they say the ethanol gel is enough. But of course nurses rarely use enough gel (research shows you have to use a lot), and the ethanol has to evaporate entirely (leaving dry hands) in order to kill microorganisms, and nurses rarely wait for this. And of course, washing hands plus using ethanol gel would be better than either precaution alone. Even the infectious disease physician on my team said these measures, including sterile port access, were not important, despite solid evidence to the contrary. In arguing with me, that same infectious disease physician repeatedly said that the infection rate in the cancer infusion bay was “acceptable.” That rate, by the bye, is three percent for blood infection; I wonder how many people have to get sick with blood infections before he’d consider the rate unacceptable? Four percent? Five?

In any event, I’d be willing to bet that all these things Greg and I have done—keeping away from people, wiping down all the groceries, learning about my disease, and demanding excellence from the hospital staff and physicians—surely all of these have had a huge impact on my health. I’m sure some luck was involved, too. So some of the cards were dealt to us by chance, but we dealt some of the cards, stacking the deck in our own favor.

‡It might seem weird that a physician and the main nurse working on a team together would not be on the same page about therapies, or how to reduce risk of infection, or whatever. It certainly is unfortunate, but in my experience it’s not uncommon at all. It’s surprisingly common for the members of a single team to have differing views about your care, and the members of that team don’t bother to coalesce their views into a single message. The only sense I can make of this is that the egos involved are so unbridled that none of them are willing to budge. Of course, this leaves the patient confused and often unable to make an informed decision. And it’s cruel. It’s especially cruel to the patients who cannot, for whatever reason, advocate for themselves. I see no evidence that physicians’ very high view of themselves will change anytime soon. And this single factor alone is one of the best of the many reasons why hospitals should have formally organized patient advocacy departments that are facilitating and conducting real patient advocacy, and not just walking patients through insurance paperwork (which is what most of them do now).

My good friend, Johanna Wilson, recently posted a comment to my last blog. I find it so compelling that I’ve deleted the comment and reproduced it here in its entirety. It is honest, humble (perhaps a bit too self-deprecating, though), and I think quite representative of the way people with cancer feel—and a strong denunciation of the popular view of how we feel. This deserves front-and-center attention:

I’m with Ms. Ehrenreich in many of her objections to our society’s popular perspective of cancer. Most of the “cancer people” I’ve spoken with don’t like the term “survivor.” In my childish frame of reference, I survived chemo, not necessarily cancer. (It was the cancer that failed to survive the chemo!) It seems to me that survivors are people who withstand a terrific onslaught because of something they did to promote their survival. If you live through a catastrophic event as a passive observer, you just got lucky.

I also jump on the bandwagon of folks who object to the militarization of commentary on cancer: “battle,” “struggle,” “war.” I don’t remember any battles or war. I just remember treatment. Likewise, terms like “brave” and “determined” didn’t apply to me. All I did was have treatment. My medical team and my caregiver put forth all the effort. I just “took it.” I certainly never wondered why more hadn’t been done in cancer research (speaking of Ms. Ehrenreich on that last point there). I felt lucky to live in a society that could provide treatment, and I was lucky to be able to access it. (I know you share that appreciation.)

I may lack an important personality trait that promotes the survival of the species, but I just never felt any anger or sadness about having cancer. (A feeling of loss of control right there at the first, but that passed.) Fortunately, I never wondered, “Why me?” (I’m always tempted to ask, “Who would you nominate as your replacement, then?”) The cancer didn’t pick me. I may have actually contributed to its development with some lifestyle choices: Poor diet, lack of exercise, stressful response to work, etc. No one to blame except possibly myself.

What I did experience in my own cancer journey was an outpouring of friendship and caring, including the way out of the way side trip you and Greg took to visit me! I am confirmed in the absolute knowledge that hair and boobs and fingernails are so overrated. (Well, fingernails and toenails are nice, but they’re not part of my identity.) For a brief time, my concerns were bigger than the petty irritations of daily life. (I’ve forgotten most of that lesson. Marty says I’ll have to repeat the exercise.) Mind you, I’m quite aware that my journey and treatment pale in comparison with yours, but for me, it was a difficult time, but not a negative time. It just was . . . only bigger. I’m not sure it’s any more appropriate to react emotionally to cancer than it is to an “angry sea” or a “merciless desert sun.”

It appears that I’m over whatever I had. My nose has stopped running, and my slight cough has resolved as well. I felt a bit under the weather yesterday, but I’m feeling better today—not as good as before this scare, but I’m getting stronger again.

So much of this process is unknown, but a lot is known. One of the things we know is that slightly immature T-cells are responsible for initiating immune responses against viruses. When these T-cells come in contact with other cells that are infected with viruses (or that are otherwise presenting “foreign” chemicals), they do a variety of things that ultimately cause the infected cells to die. But this process takes time, and the infection can spread in the meantime. So, one of the things these immature T-cells do to help with future infection from the same virus is they give rise to more specialized cells. Some of the resulting differentiated T-cells are known as Cytotoxic T-cells (or sometimes CTs, or CD8 cells, where CD refers to a group of proteins on the surface of the cell membrane, deemed Clusters of Differentiation. CTs, or CD8 cells are also sometimes also called T8 lymphocytes, but I’ll just stick to CTs).

CTs are one of many kinds of so-called memory cells; they retain a special chemical affinity (a “memory”) for cells infected with a specific virus, and when the CTs encounter infected cells again, they kill them on the spot—a much faster solution than the slower process that happens the first time infection occurs. This, coupled with other systems, is why once we’ve had a virus, we’re forever immune.

The problem for me is, I don’t really have any T-cells at all. My new immune system is not developed enough to have created any mature T-cells or even any of the slightly immature T-cells needed to initiate the response described above. And that means I don’t yet have any Cytotoxic T-cells from my donor marrow. As CTs are long-lived memory cells, I presumably have circulating in my peripheral blood some of my original, native T-cells that survived the stem cell transplant, but that doesn’t appear to be true. We know this because of the results of my most recent chimerism tests—genetic tests that determine the proportion of peripheral blood cells that are of my genotype versus my donor’s genotype. (Remember that my blood is a chimera right now, like Dictyostelium—part original cells, part donor cells).

Those genetic tests, performed a month ago, show that when considering all of my T-cells, 97% are donor genotype. Those 97% are very immature (too immature to give rise to CTs), and the remaining 3% are what’s left from my former immune system. And while this 3% no doubt includes mature T-cells, and some CTs, they just aren’t very clinically effective for most people (so says my physician). Hammered from the chemotherapy of the transplant? The radiation? Too few to mount a defense? I’m not sure, but they’re impact is apparently thought to be minimal in any event.

But something has changed. I had these symptoms, and now they’re gone. Maybe I beat a virus somehow; maybe it was allergies. I guess I don’t care too much, except from an academic position. But one thing is certain: It couldn’t have been that crystal I shoved up my butt. I only did that an hour ago.

One of the drugs I’m on for immunosuppression makes me shake constantly. It’s getting annoying. This side effect, coupled with the neuropathy in my hands, makes simple tasks, like lifting a fork, difficult. I wonder if this is a glimpse into how people with Parkinson’s feel? Probably nowhere nearly as bad, but it bites nonetheless.

The drug, tacrolimus, is not used widely for stem cell transplants, but is used generally for kidney transplants. It’s strange that I’m struggling to rebuild my immune system, and I’m taking drugs to slow that process way down. But this is part of the dance—coaxing the new cells to slowly, ever so slowly open their eyes, and think that what they see is self. If they wake up too quickly, they’ll see clearly and attack.

A related immunosuppressive drug that I’m taking, sirolimus, is used probably by even fewer stem cell transplant centers, but the data on this drug are impressive. As an inhibitor of the mammalian Target Of Rapamycin (mTOR; indeed, sirolimus is rapamycin), it blocks a complex cascade by which cells proliferate, and so all is slowed down. The new cells are very sleepy.

I’m very lucky to have these drugs. My current physician is rare in that he does clinical research, and he is actually good at it (this is rare among physicians). These immunosuppressive drugs, coupled with other novel treatments, are the reason my hospital’s success with stem cell transplants is so much higher than the national average. Every day I am grateful that I have the care I have (and my praising physicians is as rare as their conducting good research, so that should tell you how confident I am in my physician).

It is worth noting that both of these chemicals are natural derivatives of bacteria: tacrolimus comes from one species of Streptomyces, sirolimus from another species of the same genus. In fact, most of the chemotherapies I’ve had are naturally occurring biological products. Vincristine—one of the first chemotherapies I ever took, and a potent inhibitor of cell division—comes from the Madagascar periwinkle, once placed in the genus Vinca, where the drug gets its name. Adriamycin, a chemotherapy that damages DNA directly, is also derived from bacteria. And an experimental drug currently showing great promise, Gossypol, is an unaltered, direct extract of the cotton plant, found in the stems, roots and seeds. This drug directly blocks bcl-2, the epicenter of my cancer’s existence, but more on that later.

I could go on and on. Hundreds of our pharmaceuticals come directly from natural sources. The only difference between so-called “natural” medicine and “western” medicine, again, is that the latter is subjected to careful testing, and the former is not.

You’ll notice I’ve added that image to the blog, a link to The OUT Campaign, a site dedicated to encouraging atheists to come out about their views. This is something that I’ve had a hard time doing for many years, despite overcoming many other fears years ago (for example, having been out as a gay man since I was sixteen).

The main reason it’s been hard for me to tell others about my atheism is that I have many friends and loved ones who are believers, and I cherish their company, respect their choices, and would hate to offend them. I have not posted this image to offend anyone.

But for this blog, it makes sense. Pervasive in our culture is the view that mystical forces—unseen and all-powerful, ancient and misunderstood—are the true solution to cancer. As Sontag observed in her incredible work, Illness as Metaphor, this view is common to all diseases when the ultimate cause of the disease is unknown, or poorly understood. For people with cancer, we often become desperate and despondent when therapies fail—I know these feelings all too well. And so many turn their hope to magical, “eastern” therapies. As far as I can tell, the only difference between the evil “western” medicine and the enlightened “eastern” “medicine” is that the former has, by definition, been subjected to empirical test, and the latter has not.

But people who hold these unscientific views are unrepentant: About a year ago, I was visiting some friends after yet another therapy had failed, and my cancer had doubled in volume; I was, I think understandably, disappointed, sad, and probably a bit grumpy. And a person I had only met a day before told me that people who are happy are more likely to survive cancer than sad people. When I asked for the name of the peer-reviewed journal from which this insight derives, she said she thought she read it in Omni Magazine (a discredited, discontinued, pseudo-scientific publication that promoted supernatural phenomena cloaked in the language of science). Her message here was clear: It’s your fault that you’re loosing this battle; cheer up, or face the consequences. (That fall, the fabulous Barbara Ehrenreich eviscerated this nonsensical view; you can find an excerpt here.) So I asked her if she thought it would help if I shoved a crystal up my ass. She was not amused, and I think, remained unaware of the horrific statement she’d made. Her husband (another atheist), standing next to me, hung his head in shame.

The view that crystals, and prayer, and laying on of hands can cure people of cancer is growing in our culture. When last in the hospital, with my horrific C. difficile infection, a staff member came into my room one day and explained that she could perform Reiki on me, which would help my nausea. My nausea was caused, as she put it, “of course, by unbalanced energy.” Um, no: My nausea was caused by an infection, thank you very much.

And this is quite strange, given the growing success of modern medicine’s treatment of cancer. Just look at the death rates for breast cancer below.

From the American Cancer Society's "Statistics for 2009."

Death rates were essentially stable or rising prior to the early 90′s, when genetic techniques (and thus, intimate understanding) first became available. Crystals and the like were being used just as much in the 70′s (probably more), but it was the science that made the impact, not the white light visualizations. The biological research that informs physicians is imperfect, and many still die, but this does not mean we are failing. Science is recursive, unlike any other system of knowledge; it challenges itself, by its nature, to prove existing ideas wrong. Still, not all cancers show this pattern, but the science that biologists use to discover details of the natural world inform physicians, who employ this knowledge to save lives. And many lives have been saved.

But this hasn’t stopped many people from thinking otherwise. Stanley Tucci recently lost his wife to a form of cancer, and in a Fresh Air interviewproclaimed that she did not die of cancer, but of the “conventional” treatments for cancer (the discussion of cancer begins at 18:35, and Tucci’s comments on alternative therapies begin at 19:30). Tucci went on to say that he only found out about “alternative” (that is, not subjected to empirical test) therapies months before his wife’s death, and concluded that had he known of these alternatives earlier, his wife would still be alive. I love Tucci; in fact he is one of my favorite actors, and I’m sure he is horribly bereaved; but this is just irresponsible.

Similarly, Bill Maher—famous anti-vaccine and anti-medicine advocate—in April of 2008 blamed Senator Arlen Specter for having cancer, and for his cancer’s relapse. (I would link to the YouTube video where I watched this, but it has apparently been deleted by HBO, even though many other Real Time episode clips from the same month remain. Hmm.)

I have watched Maher off and on for years. I agree with much of what he says, and I think he’s brave and smart. But for some reason, when it comes to medicine, he has lost all rationality. Maybe it’s because he’s lived in California for so long. Who knows? Only in a world where infectious disease has—with a few notable exceptions—been completely obliterated by medical action that derives from basic biological science, would someone claim that the real problem is the vaccine, the solution. And I could put many links to The Huffington Post (which I generally enjoy) with similarly inane assertions. Maybe I’ll do so in a later entry (but you can see for yourself in their Living section on any given day). And just look back 70 years, and consider the hundreds of thousands of children who died then of infections we now rarely see—infections we have conquered, and in some cases eradicated, with vaccines—and it is clear that Maher’s hyper-modern, myopic view is flatly false.

Microorganisms are living things, and they are merely trying to stay alive, just like us. It just so happens that they make their living by harming ours. We are no different; we must kill life to live as well. Only the plants are spiritually clean on this one. So, good nutrition will not save the world from this biological conflict; variation in resistance exists everywhere, and bacteria and viruses evolve, becoming more adept at overcoming our defenses. Good nutrition alone will not prevent infection, and many will succumb without the enormous benefit of medicine. It’s quite perplexing (and, increasingly infuriating) to watch Maher rant against religion as stupid in one breath, and in the next proclaim that good nutrition is the solution to illness, and therefore cancer therapies are bogus, and pregnant women should not get vaccines.

So I am not writing this with Maher’s intent. I’m not here to defame religion. I’m simply putting this link in my blog because it is honest, and it is a reminder of an important fact that both people with cancer and their loved ones need to remember: Cancer is a material condition; it requires a material solution.

Neuropathy, abdominal pain, diarrhea, nausea, vomiting, narcotics, dehydration, extreme fatigue, and crushing sadness—these are the experiences I’ve been enjoying for the last week.

This has been a hard week—the last few days especially so. With the ongoing C. difficile infection (which is perhaps fully suppressed now . . . maybe), I’ve been eating nothing but yogurt for more than a week. Well, I did have a banana two days ago, but the point is I’ve been wiped out. My protein levels have been low which caused my cells to start to lose their integrity, leaking fluid that was filling my feet like balloons.

I knew that the stem cell transplant would be hard, of course. But I was naive; I did not anticipate the immense fatigue and my becoming nutritionally deprived. I’ve never though twice about skipping a meal, or two, or even fasting for an entire day—I’ve done all of these many times. But this transplant is fundamentally different. My protein is low; many macro- and micronutrients are very low, such as magnesium and potassium, so I have to take supplements. I should have anticipated how much energy my body would require to build all of the cells in my blood, a mass that I suspect may amount to two pounds of tissue or more. I guess people told me I would be tired, but I thought they meant chemo-like tiredness, the kind that comes and then passes a few days after the infusions. I didn’t get it that I would be completely wiped out for weeks, or months.

I’ve been exhausted most of the time, and unable eat because of the diarrhea, so I get more exhausted, etc. The neuropathy in my feet and hands means that walking requires the mustering of will and enduring the sensation of walking on hot coals. Showering means filling the tub with cold water so the warm water from the shower doesn’t burn my feet. I rarely get out of the house, so no sun, no cherry blossoms (which I love). I’m such a social creature, always needing to chat with colleagues and meet with friends. Without that, sadness sets in, and sleeping all day because of the exhaustion makes it worse. I’ve been in a very deep hole for too long. The last two days, I cried almost continuously.

My lovely partner gently encouraged me to reach out to others on the phone, and that really helped.

When I’m not in the bathroom applying ointments containing sodium hydroxide to various parts of my groin to kill the fungus that won’t stop growing, or taking pills to satiate the nausea that pops up from time to time, or trying to get some work done, or sleeping (=what I mostly do these days), I watch TV. Frankenstein was on earlier—the good one from 1994 that tells the story as Shelley wrote it—a story of a world on the brink of medical miracles, and of the hubris of such thoughts. Every time I read it, I find it more relevant. As I’ve matured as a biologist, I see more and more genius in it.

Now with cancer, and having just seven days ago undergone a stem cell transplant to completely replace my native immune system—the one that’s been rebelling against me for at least four years—I see another layer to Frankenstein. On its face, it is a book as much about transplantation as reanimation. Getting living parts from different people to happily co-exist must have been at least as perplexing to Shelley as getting long-dead tissue to come alive again. The latter is taken up by the book, and I am keenly focused on the former.

Stem cell transplants are nothing short of the vision—if small-scale—of Victor Frankenstein. And, there has been some success with this procedure in the intervening 200 years. Not so much that you’d run out and get a new, better immune system if yours wasn’t up to snuff, mind you. These monstrous transplants are saved only for those who have no other options—like me.

So, after years of willingly taking into my body chemicals banned by various war crimes tribunals (that is, chemotherapies of many flavors), I’m left with two options: Replace a very large, important part of me (all the cells in my blood, including my entire immune system) and hope for alternate ending to Shelley’s great work, or do nothing and have that rogue part of me kill the rest.

With great reluctance, I’ve chosen to take my chances with fire theft.